Family Response to Disease From Environmental Disasters Often Surprising

Families dealing with diseases resulting from environmental disasters — such as Love Canal (a Niagara Falls, N.Y. neighborhood where toxic waste secretly was buried in the mid-1970s) or asbestos-related illnesses — often respond with denial, conflict or silence.

New research shows that the families’ responses mirror what’s going on in communities divided by a disaster, said Heather Orom, PhD, an assistant professor in the University of Buffalo School of Public Health and Health Professions and the paper’s lead author.

The purpose of the study — apparently the first of its kind — was to identify how family members communicate when they are facing these issues to help better characterize the social costs of these disasters, Orom said.

The findings were, in some ways, counterintuitive, Orom added.

“The casual observer might assume that when people become seriously ill and there are fatalities, that families would come together and support one another,” she said. “But our research shows that oftentimes, the opposite happens. That is because whether it’s buried toxic waste, such as in Love Canal, or contaminated drinking water in Woburn, Massachusetts, these slow-moving technological disasters become such a divisive issue in communities. The family dynamics totally mirror what happens in the community.”

Orom’s research consisted of focus groups conducted with residents of Libby, Montana, who either had asbestos-related disease, had family members with the disease, or were not affected either way.

For almost 70 years, asbestos-contaminated vermiculite, a mineral commonly used in insulation, construction and as an additive to potting soil, was mined and processed in Libby. As a result, asbestos-related diseases, such as pleural disease, asbestosis, lung cancer and mesothelioma, which often are fatal, are common among former mine employees.

Family members may also have been affected by the asbestos carried home by workers on their clothes. Cases also have been linked to day-to-day exposures among people residing in the town and surrounding area.

“We found that the people in these situations can be victimized twice,” Orom said. “They become ill and then may be stigmatized because some members of the community view illness claims as lacking credibility, as baseless attempts to get compensation that tarnish the reputation of the town.”

According to the researcher, there are actually two disasters facing families: Typically, the news of the contamination causes the devaluation of their properties, as well as businesses to start leaving the area.

“Suddenly, you’ve got two disasters: An economic disaster and a medical disaster,” Orom said. “It’s not surprising that some families decide ‘let’s stop talking about it.’ Those who continue to bring it up are then labeled troublemakers. Those who are sick and are seen with their oxygen also get labeled.

“Many people, especially those with symptoms, start to isolate themselves at home and that affects how and if they discuss their illness with family members.”

Orom added that this behavior could prevent people from seeking the medical or psychological help they need. It also could prevent them from discussing important measures that other family members should take, such as screening to find out if they, too, have the disease, she said.

Orom and her colleagues identified five communication patterns within the families: Open/supportive, silent/supportive, open/conflictual, silent/conflictual, and silent/denial. They speculated that the silent and conflictual types of communication could be barriers to attitudes and behaviors that would promote better health, such as screening for asbestos-related diseases, and could increase psychological distress in families.

“There is a reason why people don’t like to discuss illness in general, anyway,” said Orom. “With an environmental disaster, there is an additional layer creating a propensity for silence. In our focus groups, we saw instances where families rejected the legitimacy of the illness and estranged the person who was ill.”

Orom noted that the negative effects that come from these kinds of responses within families do have significance in the larger community and should be taken into account by policymakers.

“If there are real social and financial costs that result from these disasters and their effects on family relationships, for example, if divorces increase as a result, then maybe this kind of research can help move policies in a direction of being more protective of communities,” she said.

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About Janice Wood

Janice Wood is a long-time writer and editor who began working at a daily newspaper before graduating from college. She has worked at a variety of newspapers, magazines and websites, covering everything from aviation to finance to healthcare.